ME Awareness Week:
No Lockdown fun for Melanie, just bedbound with ME

My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.

For years she ranged between moderate to severe symptoms.  She made several attempts to return to the school she loved, but in the end, she had to have home tutors, when she could cope. Her social life was extremely limited, but she joined in family life, when she could. She has been really severe for the last 8-9 years, and has not been outside for 4 years.

Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle.  Often a conversation is too much for her and she shuns any company most of the time.

Lockdown brings no change to her life, except that she does know about this awful virus and she understands the ultimate threat to her, and our lives.

My partner and I are in the fortunate position of being able to isolate ourselves, while the brave NHS doctors and nurses battle under very difficult conditions.

If only patients with ME could experience that same dedication and true understanding.

Dee Molyneux Parker, South Wales